Children of a Lesser God

Clothed in a pretty, frilly frock, she stares vacantly at the dozen toddlers, infants and children gurgling and playing happily around her.

Just a few months ago, Susheela had been left to die along with another baby in a hospital. No one wanted to touch them, covered as they were with bed sores and oozing putrid discharges. Even the doctors and nurses did not come near, knowing that the children had tested positive for HIV.

Sister Shiela, of the order of the Daughters of the Cross, easily persuaded the hospital staff to release the infants to her care. One died before she could get custody. The second, Susheela, is alive though retarded in the St. Catherine's home for positive children, the only home of its kind in Mumbai.

Over 90 percent of such children are exposed to the virus in the uterus of the mother, during childbirth or in the early post natal period. Besides, there are children with medical conditions that require constant blood transfusions, street children who indulge in high-risk behavior and are sexually exploited, sexually abused children and child prostitutes who are very vulnerable to the disease.

According to Dr Sachin Changedia of the NGO, the Indian Health Organization, taking into consideration the current HIV prevalence rate of one percent and the 27 million births per year in the country with a 30-35 percent risk of infection, there are likely to be at least 80,000 positive children born to infected mothers every year in India.

Says Sister Shiela, "Everyone was talking of the need of a place to take care of HIV positive children, but no one was willing to take the initiative." She herself decided to act after the Mumbai police dumped 160 sex workers raided from the city's largest red light district, Kamathipura, in the St Catherine's Rescue Home.

Many of them were HIV positive and a large number were pregnant or already had babies. "We decided that something had to be done as no one else in the country was doing it," she says quietly. She started the home in September 1996 to provide shelter for HIV positive children who were either abandoned or whose parents were dead or incapable of looking after them.

Little wonder then that till quite recently, there was no one to take in and provide for homeless HIV positive children. Two years ago, an NGO working with Commercial Sex Workers (CSWs) in Mumbai's largest red light district, Kamathipura, had to run from pillar to post to find a home for an HIV positive infant of a CSW who had died of AIDS.

Charitable organizations said they did not have the facilities to take care of such a child, while others openly refused to take the child in. Ultimately the child just vanished into the bylanes of the district. Today, St. Catherine's is willing to take such children in, but does not want to have more than 20 at a time, as they feel that will dilute the level of care.

Another organization, the Committed Communities Development Trust (CCDT), has launched project CHILD for children of parents affected by HIV/AIDS. They provide home based care and counselling for both the parents and the children. They also have a temporary shelter for the children who may or may not be HIV positive.

Ashray, the CCDT Home, keeps such children till the age of eight. They are then offered for adoption or sent to other organizations that care for children. Only when they are offered for adoption are they tested. One such infant who tested positive and turned nine recently was sent to St. Catherines.

Admits CCDT Director Kamini Kapadia, "Since it is all relatively new, we haven't yet worked out a policy about what to do with children beyond the age of eight who may test HIV positive and not find another home. We are still trying to resolve all the problems along the way."

CCDT has also started a program to sensitize teachers in 25 schools. It has been noticed that teachers in their ignorance often refuse admission to HIV positive children and discriminate against them in class. Kapadia says the response has been good. CCDT is also helping Vatsalya, an NGO working with street children to formulate an AIDS prevention programme for them.

Both Vatsalya and Support, an organization working with street children around railway stations, have special HIV/AIDS prevention programs. The Municipal Corporation of the city has started a special program for AIDS awareness and prevention in its schools.

The IHO has started a project in collaboration with a local maternity hospital to prevent transmission from positive mothers to infants, through counselling, therapy with the drug AZT for positive mothers and promoting ceasarian sections among them.

These are all individual efforts, but there appears to be no coordinating body to oversee and provide guidance for a cohesive policy on AIDS involving children. Says Director General of Maharashtra's Health Services Subhash Salunke, "Right now we have no specific programs for children, but we encourage NGOs to take the initiative and provide them support."

Salunke says they look towards the India government to formulate policy guidelines and admits there are currently no programs for AIDS orphans or HIV positive children.

For a people who profess to see the nations future in its children, this appears to be a particularly lackadaisical approach. By the time the state and the city wake up to evolve a policy, it might be too late for the many Susheelas in Mumbai, experts say.